2019 SABCS : Metaplastic Breast Cancer Global Alliance
San Antonio, TX : December 10-14, 2019
Meeting for San Antonia Breast Cancer Symposium
San Antonio, TX : December 10-14, 2019
The Metaplastic Breast Cancer Global Alliance was accepted to exhibit at our first SABCS Symposium. We were well represented and maintained a busy booth. Many professionals are interested in learning more about us and Metaplastic breast cancer. Every conference we attend offers us valuable time to collaborate and share information. Jim Harvey Sy met an oncologist from Saudi Arabia that successfully treated a metaplastic patient that had a complete response with this immunotherapy protocol : https://pubmed.ncbi.nlm.nih.gov/31690713/
We were able to share our Diagnosed Member Map at our Booth from a LapTop and some Group Member Polls that we felt were valuable.
MpBC advocates supporting our busy booth:
Breakfast with the Researchers at Marriott Riverwalk Cactus Flower Resturant:
Scientific Keynote Speaker- Scott Gottlieb, MD (FDA)
I was able to represent the MpBC Global Alliance, Inc. this past March 5th -8th 2020 for the Miami Breast Cancer Conference. Before she passed away this past January, Patti Hennessey the late wife of Mike Hennessey CEO & President of MJH Life Sciences arranged for me to attend. Patti was originally diagnosed in 2011 with ovarian cancer and was also BRCA+. She joined our group in 2018 after being diagnosed with Metaplastic Breast Cancer. She fought a hard, long battle. She managed to beat all the odds until metastatic disease was found in her brain this past January. While she still carried on with a positive outlook she passed away January 28th. I remember her expressing her joy with the birth of her grandchildren. It was a shock to Susan Oran and I as we communicated often with her and she was our go-to-expert in regards to the BRCA mutation.
I was privileged to attend the Patient Keynote Address done by an energetic young metastatic Nalie Agustin and was blown away by her documented story. This year and forward the Keynote Address is renamed “The Patti Hennessy Keynote Address”. Her son, Mike Hennessey Jr. did a touching tribute. You can visit her story here: https://www.mpbcalliance.org/news/patti-member-story-spotlight/
My takeaways: Metaplastic Breast Cancer is not on the “general” research radar. Triple Negative Breast Cancer is and there were sessions in regards to TNBC. These conference days begin at 6:30am and can go into the evenings. I am learning to navigate my way through the schedule and pick and choose which sessions are of most value for our rare group. I do not have a medical background but tend to understand and pick up on details that may help keep us up to date on treatment options.
What I have learned? This research takes a long time! Nothing stands out for me to consider focusing on or report other than Immunotherapy is advancing in combination with other targeted options or chemotherapy. Focus was also placed on identifying biomarkers to benefit from precision medicine.
ASCO and SABCS attract more global experts. MBCC, for now is a bit more intimate and relaxed, which allows personal interaction with the most knowledgeable experts studying and treating the most difficult breast cancer cases. At First, I was nervous to sit in on “Meet the Facility Case Discussion” sessions but by the second day I relaxed a bit more and listened and learned about difficult cases that treating oncologist are being challenged with.
Due to the Coronavirus some Faculty did not make it in town. Luckily, I was still able to introduce myself and our organization to these top research oncologists: Debu Tripathy (MD Anderson), Patrick Borgen (Maimonides Medical Ctr), Michael Alvarado (UCSF), Adam Brufsky (UPMC), Judy Boughey (Mayo) Fleure Gallant (Miami Med). I was also able to reconnect with Hope Rugo (UCSF).
To date our Metaplastic Breast Cancer Global Alliance, Inc. has been represented at ASCO 2019, SABCS 2019 and now Miami Breast Cancer Conference 2020. We are making headway. This is tough and we have a great team with Susan D. Oran, Stephanie Oran, Casie A. Houmes (PA), Jim Harvey Sy, Mary Anne Baysac (MD), our supports from the Diagnosed Women’s only Group and The Support and Information Group run by Linda Pirkle and our Growing Global Communities. Together we are all “Supporting The Advancement Of Research Into Metaplastic Carcinoma of the Breast”
Our future will be focusing on gathering data with Ciitizen and we recently have been introduced to a dedicated researcher supporting Dr. Stacy Moulder’s efforts affiliated with MD Anderson, Clinton Yam M.D. We are seeing the benefits from his assistance and look forward to his involvement.
Spotlight on Our Diagnosed Members: Claire’s Story
Metaplastic Breast Cancer Global Alliance Members’ Stories
Hello everyone, We’ve been reading some of the posts about your journeys. It’s been helpful to see stories familiar to us. After being diagnosed with MpBC we’ve found it difficult to find information I can relate to.
I suppose I should tell you about my own up and down experiences. Well in July 2016 I started experiencing “leakage” from both breasts. After ruling out pregnancy, I visited the doctor. My bloods were taken and I was told I had vitamin D deficiency and that my body was just naturally changing with age. At this time I was 40.
Fast Forward to January 2017 and I discovered a lump on my left breast. Again I went to the doctor. I was given a physical examination and told I had a cyst. I was told that I had lumpy boobs and that if the cyst was stil causing discomfort then I should return in 6 weeks during a different stage in my menstruation cycle. After 4 weeks I was back at the doctor. After another physical examination I was told again it was a cyst and once again to return in 6 weeks.
I was, by now, in a fair bit of pain. So back to the doctor I went (March 2017).Although still adamant I had a cyst, because of the pain I was describing I was sent for a mammogram……. as you all will have guessed by now, no it wasn’t a cyst. Ultimately I was diagnosed with stage 3 ER+ invasive ductile BC…..they also discovered a smaller lobular carcinoma on my right breast.
I had chemo from April 2017 to August 2017 (Fec and Docetaxel). Chemo was hell. I contracted sepsis and was neutropenic 3 times🤦….but ultimately got through it. A double lumpectomy followed by 30 rad sessions in Dec 2017 and I was given the all clear!! 🎉🎉
Over the following months after my recovery, my family and I completed various activities to raise funds for the cancer organisations that had helped us. Including hikes, marathons, mountain climbs and in May 2018 , a 100 mile trek through the gorgeous Scottish Highlands that I finished with my brother. Life was there to be lived and I wasn’t holding back .
In January 2019 I started having shooting , stabbing pains from the centre of my chest to my left shoulder. I contacted my cancer team and met with my consultant who oversaw my previous treatments. My last mammo had only been 6 months prior and was found to be normal. With that in mind and after physically examination, he said he thought it could be fluid, caused by the full lymphnode removal I had on the left side…..no such luck….. between a bit of back and forth between lymphedema clinic and my GP, I discovered a lump in the centre of my chest I was given a chest x-ray ( normal) and referred for ultrasound that confirmed a tumor in the centre of my chest. A needle biopsy later and I was told that once again I had cancer.
CT scan later confirmed metastasis to my breast bone and liver. My full diagnosis was metaplastic squamous Breast Cancer. I have been told it’s mostly triple negative but also with a low ER and PR score of 3. I was also given the devastating news that my cancer can’t be cured and that average data showed I had a life expectancy of 12 to 18 months.
Now I plan on bucking the trend! And want to give myself the best chance at life I can! I want to see my 3 boys (13 year old twins and 10 year old) grow up and marry. I want to grow old with Danny and be happy with. I have so much life in me that I can’t believe this is happening again.
I’ve had my first chemo ( carboplatin) on a 3 week cycle and I’m hoping I have positive response.
The pain from tumor is constant. Ive been prescribed morphine, but that has its own issues 😒.
I’m keen for all the information I can get on my cancer and praying that my treatment is effective.
I try to stay clear of Dr Google and tell Danny to do the same, but he seldom listens 🙄😉
I feel for my family and friends, who have to go through this again with me. I wish they didn’t have to.
ASCO 2019 : Metaplastic Breast Cancer Global Alliance
Chicago, IL : May 31st– June 4th 2019
Meeting for American Society of Clinical Oncology
Chicago, IL : May 31st– June 4 2019
The Metaplastic Breast Cancer Global Alliance was excited to qualify for an ASCO-Sponsored Patient Advocacy Booth this past May 31st through June 4th, 2019. This annual meeting of the American Society of Clinical Oncology provides nonprofit patient organizations the opportunity to meet, interact and exchange information with approximately 40,000 meeting attendees from all over the globe.
Florida -- 25
South Carolina -- 6
Georgia -- 12
Alabama -- 4
North Carolina -- 9
Tennessee -- 8
Mexico -- 1
New Mexico -- 8
Arizona -- 7
Utah -- 2
California -- 35
Oregon -- 6
Montana -- 1
South Dakota -- 1
Minnesota -- 7
Iowa -- 5
Illinois -- 22
Wisconsin -- 6
Michigan - 17
New York -- 18
New Jersey -- 11
Pennsylvania -- 16
Maryland -- 8
Washington State -- 5
Virginia -- 11
South Africa -- 1
Costa Rica --
Germany -- 6
Netherlands -- 1
New Hampshire -- 1
Kentucky -- 7
Indiana -- 9
Greece - 2
Poland - 1
Connecticut -- 1
West Virginia-- 2
Ontario Canada-- 16
Manitoba Canada-- 2
Alberta Canada-- 6
Nova Scotia Canada-- 1
New South Wales Australia--3
Scotland, United Kingdom -- 3
England, United Kingdom -- 22
Republic of Ireland -- 1
Alaska -- 3
Singapore -- 2
Turkey -- 3
U.S. Virgin Islands-- 1
Saskatchewan Canada-- 1
Wales, United Kingdom-- 1
Paraguay South America-- 1
North Dakota -- 1
We were able to share our Diagnosed Member Map at our Booth from a LapTop.
Members, Family and Friends
We were very fortunate to have ten diagnosed members, family and friends attend this valuable conference and assist our busy booth. We were thrilled with the welcome we received from doctors all over the world who were surprised to see a patient advocacy group representing MpBC! We shared information with many doctors and even made a short video with a doctor from Brazil so that she could provide better support to her patients!
“Raising Global Awareness and Supporting Research for Metaplastic Breast Cancer”
Continued Need for Research
The week was capped off by an early-morning session on Monday the last day of the conference, delivered by Dr. Stacey Moulder, that highlighted Metaplastic Breast Cancer and the need for research.
Take Home Points and Conclusions
ASCO is the largest venue for sharing cutting edge scientific and educational developments in oncology and we were very proud of all our efforts and how we represented our rare community.
Meeting with Dr. Moulder at our Booth
Other Patient Advocates We Met
Ian Still Sporting Our Shirt!
Best Memories and Takeaways from ASCO 2019!
Susan D. Oran– “For me, the highlight was hearing Metaplastic Breast Cancer discussed in a session attended by hundreds of doctors at 8am and meeting with Dr. Moulder again. Eating dip-n-dots with my oncologist Dr. Michael Nissenblatt and meeting all of you wonderful people and seeing how we were able to ban together towards our common goals so easily!”
Nancy McCormack Buschener– “Meeting all of you and your amazing doctors. I learned so much! Oh and the cake building!”
Sue McCaldon– “For me it was meeting you all and having the opportunity to go into sessions to learn so much. Also, seeing my doctor and finding my drug trial poster and talking to the research people in the drug company.”
Dr. Janku stopped by to say Hi!
Jim Harvey Sy– “Best part was meeting you guys and learning that there is so much out there focused on finding a cure for cancer”
Casie Friedrich- “For me it was seeing oncologists and other oncology professionals from all around the world looking to us for information to better help their patients! And the Lattes with your face on them!”
Stephanie Oran– “Hearing Dr. Moulder say that social media has provided a way for doctors to meet patient advocacy groups (like us!) Oh and all the free snacks!”
Laura Houmes– “My first takeaway is WOW! I am completely exhausted but was worth all our combined efforts. I can’t say there was any “best” part of our ASCO gathering. The whole event was a blessing to me and more than I could have imagined. Metaplastic breast cancer brought us all together and we all are trying to make a difference. I believe we made all who have donated to our nonprofit proud!”
Finally, just some images from our time at a local historical, 1800s haunted AirBnB!
14 Ways to Advocate for Yourself as a Metaplastic Breast Cancer Patient
As a patient with a rare disease, it is crucial to take charge of your care
You, as a patient with Metaplastic Breast Cancer (MpBC), have been given life-changing news. Suddenly your world is turned upside down. Your days are filled with nonstop doctor’s appointments, scans, radiation, bloodwork, and chemotherapy. It can all become very overwhelming, and it’s often difficult to keep up with all the new information you are being given.
It Takes Work
My mother — a Metaplastic patient herself — learned that she had to become her own advocate. Once she found out she had MpBC, she researched it endlessly online. She wrote down questions she had and brought them to her appointments. She bought a binder and organized all her reports. She did her best to understand how to read lab results. She was able to get valuable information from the members of the Facebook support groups she joined. She went through the usual surgery, chemotherapy, and radiation therapy.
Left with No Options
After a lung resection of the initial nodule, my mother’s cancer reoccurred. Clinical trials were then her best option. She ended up going on a clinical trial that kept her stable. The side-effects affected her liver so bad that she was pulled out of the trial.
Left with no options, she told her story on Facebook and did a lot of online research. Because of her efforts, she ended up finding a clinical trial at MD Anderson Cancer Center in Houston, Texas. The trial ultimately worked and she is still with us today — 5 years later. This is why being a proactive patient is so important.
Get the Upper Hand
Metaplastic Breast Cancer is very fast growing. It is also very rare, accounting for less than one percent of all breast cancers . Because it’s so rare, there aren’t many oncologists that are familiar with exactly how to treat it. In fact, there isn’t even a specific standard-of-care treatment for this type of cancer. It is treated the same as invasive breast cancer and triple-negative breast cancer .
One thing we’ve learned is staying ahead of disease progression gives patients the upper hand. You must have your next plan-of-action in your back pocket. This way, you can immediately take the next steps.
You Are Also a Member of Your Care Team
I cannot emphasize this enough. You are a vital member of your care team. As a patient diagnosed with a rare type of cancer, it is absolutely crucial that you stay on top of your care. Yes, it’s scary — and stressful — but your future depends on you taking an active role in your health. Below are some helpful tips that can help give you a jump-start on being your own patient advocate:
Keep a binder so that you can organize all test results, imaging, pathology reports, and visit notes in. It’s important that you ask for copies of these so you can hand-deliver them to other physicians that are on your care team. It is also helpful to keep for your own reference.
Use the calendar on your phone and set reminders for your appointments — or a physical calendar that you can handwrite them in.
Have a friend or family member with you taking notes while you talk with the doctor. It’s good to have another set of ears and emotional support.
Speaking of support…
Join a support group. Facebook is a great way to connect with many support groups. There are some specific to MpBC — the MpBC Global Alliance Facebook group is a great place to start. These groups not only supply emotional support, but also valuable information on new research, clinical trials, and ways to handle side-effects of cancer treatment. In-person support groups and seeing a therapist are also great options.
Focus on taking care of yourself. This is a good time to reflect back on your past and examine any bad health habits. Not saying they caused this cancer, but you need to strengthen your body. You need to stay as strong as possible mentally and physically during cancer treatments. Seeing a nutritionist can support this effort.
Set an alarm or reminder on your phone to take your medications.
Make sure your oncologist is familiar with MpBC. Being that this is a very rare type of cancer, it is important to make sure your cancer care team is familiar with it or has treated patients with it in the past.
Get a second opinion. It’s absolutely OK to get a second opinion. Especially when you’re diagnosed with a rare disease. Don’t worry about offending your doctor. Any good practitioner would respect your right to one. This is a time where you should consider all your options, and have a reassurance that you have the right treatment plan for you.
Schedule a port placement. Ask your oncologist about getting a port placed. This will make it easier on your veins and give better access when you are having frequent blood draws and IV medications administered.
Discuss having genomic testing done on your tumor with your oncologist. This will help your doctor individualize your treatment. There’s a list of companies that do this listed here.
Have regular scans to track disease progression. Get a plan in place with your oncologist to have regular scans done to track the status of your cancer.
Develop an understanding of the terminology. You’re probably asking, “Why should I need to know that?” Well, it’ll help you understand your diagnosis better and in decision-making. This is part of being a proactive patient.
Know the possible side-effects of your treatment. This way you know what to look out for ahead of time and how you can treat them.
Write down questions that pop into your head during the day and bring that list in with you to your appointment. Having your questions answered will give you some peace of mind.
Communication Is Key
Express to your physicians and care team how you feel. It’s true when they say that you know your body better than anyone else. Is something bothering you? Are you feeling depressed? Is there a new pain that you’ve been experiencing? If something doesn’t feel right, let your doctor know! Communication is key in healthcare.
If there is anything that your physician is talking to you about you don’t understand, ask them to repeat it in a different way. All this ensures that you are getting the best care. Patients who play an active role in their care usually have better outcomes when compared to patients who play a passive role . So, I hope these tips help involve you in your care and take charge of your health today.